Dramatic advances in acute care, rehabilitation, mobility technology and even stem-cell research give clients with quadriplegia powerful tools to facilitate their independence. But with the effects of quadriplegia so all-encompassing, how can providers ensure that they are offering the most comprehensive care available to clients?
DuWayne Kramer, president of Pacesaver/Leisure-Lift says, “The first and foremost thing a provider needs to consider is his own skill level. And secondly, there are no two quads who are alike.”
Tina Roesler, clinical education specialist at TiLite says, “Providers should work closely with the rehabilitation team and the family to ensure that client goals are being met.”
The client’s injury level and functional potential based on the level of injury need to be determined first in order to establish the long-term goal for the client. “Do they plan on returning to work, to school, to activities? Is there a care plan for continued out-patient therapy following discharge from acute rehab?” asks Roesler.
For clients with such varying needs, are there common issues that need to be considered? First, here’s a little background.
For clients with such varying needs, are there common issues that need to be considered? First, here’s a little background.
Spinal Cord Injury: The Essentials
As you read this, some 280,000 people in the United States are living with complete or partial paralysis caused by spinal-cord injuries. Most of the trauma is a result of vehicle crashes, although traffic-accident-related SCIs are declining and spinal trauma from violence, especially gunshot wounds, is rising. Falls and recreational accidents, such as Christopher Reeve suffered during an equestrian event, still account for many injuries. Although football injuries receive a lot of attention because sports figures are well known and national television audiences often witness the crippling events, diving accidents are actually the leading sports-related cause of spinal-cord trauma.
Spinal cord damage that is not the result of neuromuscular disease is caused by damage to the cord’s white and gray matter, usually through impact and compression. Impact can tear or cut the cord, or the cord can be punctured by shards of broken vertebrae or intervertebral disks. However, blunt-force trauma, whether or not the cord itself is actually torn or punctured, causes the cord to swell and become compressed inside the vertebral column, which can result in myelopathy, the loss of function in the spinal cord’s neurons.
The spinal cord, of course, carries signals from the brain to the rest of the body, and information from the body flows back to the brain via the spinal cord. That exquisitely fragile, but well-protected, rope-like bundle of neurons covered by a thin, insulating sheath of phospholipids called myelin allows us to do everything we associate with daily life. Marvelous as it is as a neural-information highway, if it’s severely damaged, the spinal cord, like the brain, finds it difficult to mend itself. Signals from the brain get as far as the trauma site, but no further. At least for now, and until stem-cell and other research makes more progress, neurons that are lost usually remain lost, leaving patients to find new ways to interact with their physical world and go on with their lives.
SCI: Anatomy and Terminology
When doctors and clinicians refer to a patient’s level of injury, they mean the location of the damage, also called a lesion. So, the high in high-level injury refers to the location of the lesion on the cord. Generally speaking, the higher the injury level, the more extensive the paralysis.
One of the most critical determinations that doctors are eager to make is the extent of a patient’s injury, which is said to be complete or incomplete. While a lesion that is a complete injury results in the loss of muscle control and sensation beneath the trauma site, an incomplete injury may allow some neural signals to pass, which can have a range of results, including paralysis without complete loss of sensation. In some cases, sensation may be limited to pressure, for example, with no perception of pain or temperature. Although each person’s experience is different and generalizations are dangerous, some patients with certain types of incomplete injuries are able to recover some movement or sensation.
These widely varying outcomes of incomplete spinal cord injuries are determined by what part of the cord is damaged. If it’s the front, sensation below the injury may be lost, although some patients eventually recover some movement. Damage to the cord’s center can take out arm movement, but leave some connection to the legs, bowel and bladder; some recovery is possible here, too. Trauma to the back of the spinal cord can leave muscle control and sensation intact, but coordination may be a problem. Finally, if one side of the cord is traumatized, movement may be impaired or lost on the injured side, although sensation may remain. The patient won’t lose muscle control on the opposite side, but sensation there is often missing.
Whether they’re complete or incomplete, SCIs are identified by their proximity to the vertebrae, the stack of bony structures that surround and protect the spinal cord. Starting from the bottom of the spine, vertebrae are classified as sacral, lumbar, thoracic and cervical. So, a reference to a C3 injury is just shorthand for an injury to the cord at the level of the third cervical vertebrae.
A cervical cord lesion usually results in quadriplegia, also called tetraplegia – the paralysis of all four limbs – because the nerves that branch off from the cervical cord maintain the connection between the brain, arms, abdomen and chest.
Other potential complications are blood clots in the legs, cardiovascular disease, chronic pain, and problems regulating blood pressure and body temperature. Autonomic hyper-reflexia is another life-threatening condition, and it can develop in just minutes. It happens when SCI patients’ autonomic nervous systems are stimulated from unlikely and unperceived sources – an overfull bladder, for example – and so dramatically over-react that the body is suddenly thrown into lethal hypertension, stroke and cardiac arrest.
Even as they negotiate these threats, high-end rehab DME can play a critical role in getting SCI patients back into the world.
The Hardware & The Software
The level of injury and the functional goals for clients with quadriplegia often determine the type of wheelchair and seating and positioning products needed.
Roesler says, “Since rehab stays are relatively short these days, providers need to be aware of the client’s functional potential; the client will likely continue to gain function after discharge, and the seating and positioning equipment should help to facilitate further function, not hinder it.”
Stephanie Tanguay, physical therapist, former rehabilitation technology supplier and clinical-education specialist at Motion Concepts, says, “A lot of small hospital systems are retaining newly injured patients in their regular rehab departments instead of discharging them into rehab facilities or specialty SCI units. It’s because of how reimbursement has been altered, but it ends up being a disservice. I think there is a lot to be said for working with occupational therapists and physical therapists who have years of experience with SCI patients. Specialized SCI centers have the best people and medical and exercise equipment, and they’re set up to educate patients about living with their injury.”
There are some clients with quadriplegia with a high degree of function while others may need a sip and puff driving system, according to Leisure-Lift’s Kramer. “I think the safety of the client in terms of pressure reduction and other issues and the level of ability are important considerations for the selection of products,” Kramer says.
Cody Verrett, national sales director at Quantum Rehab says, “When you look at power rehab, there are really three sides to the paradigm: Bases, seating systems and electronics. If you’re able to do all three of those really well, you’re able to meet the needs of these consumers in a superior way.”
Providers have to address the risk of pressure ulcers, one of the most common complications for clients with quadriplegia. Pressure ulcers occur when a site on the skin is deprived of adequate circulation because of excessive, continuous pressure. The tissue dies and an infection follows. Notoriously difficult to heal, pressure ulcers can put SCI patients in the hospital for months at a time and can be fatal.
Kramer says, “I think tilt is a good thing because even for someone with skin sensitivity, when they sit in the chair they get tired and need to move around. Tilt allows the user to change position and change pressure points. You can have a really great seating system, but you still have to change your pressure points and tilt can do that.”
Darren Hammond, a physical therapist and director of training for the ROHO Group’s Institute for Continuing Education and Research, says, “Seating and positioning prevents further complications from the injury, including pressure ulcers, contractures of other joints, deformities at the trunk or spine and pain and discomfort. It also maintains or improves patients’ functional ability while they’re in the wheelchair.”
Vice President of The Phoenix Group, Chris Barnum says, “One of the significant problems with all of the products is that one size doesn’t fit everyone.” The Phoenix Group offers different kinds of arm and other support surfaces that keep clients from putting too much pressure on an elbow or a wrist causing bruising, scarring, or a full-scale wound. “It’s been a matter of our listening to clients and therapists and dealers who have problems that a little piece of gel would solve,” Barnum says.
Evolving technology and an increase in survival rates has led to an increased demand for better equipment, Hammond says. “Science innovations like titanium, very lightweight aluminum and carbon fiber replaced heavier materials, especially steel. Lighter weight correlates to functional gains because there’s less shoulder and wrist trauma.”
The Clinician Connection
Manufacturers and providers working hand-in-hand with clinicians is an invaluable part of providing clients with the best level of care available.
Verrett says, “We need to provide products that clinicians enjoy and can work with and appreciate. We look to clinician focus groups here at corporate as well as in the field to give them exposure to prototypes and early product ideas through our beta testing and field outreach. Clinicians are an essential part of our development cycle. We’ll give them a prototype power chair, for example, and explain our ideas, concepts, our glimpse into the future and then sit back and listen. That means we deal with their concerns well before we go into full production. We don’t just hand a product off to the industry and say, ‘Here you go.’”
Tanguay agrees. “I want equipment providers to understand how valuable it is for all parties to work hand-in-hand with clinicians. As a therapist, I was very fortunate to work with some very talented RTSs who taught me a lot about the hardware aspects of wheelchairs and powered seating. And they learned a lot about the clinical aspects from working with me. I encourage DME providers to establish relationships with clinicians with deep clinical knowledge. Therapists look at things from a function point of view, and dealers have to know all the equipment options and be mindful of reimbursement. It can be a good combination.”
The experts advise providers to commit to educating their people who work with a rehab population by attending the International Seating Symposium (ISS) or the Canadian Seating and Mobility Conference.
While tilt is probably the most commonly discussed form of alternate positioning, standing can also help. Nancy Perlich, COTA, ATS, and funding specialist for Altimate Medical, says depending on the client and diagnosis, benefits can include contracture prevention, maintained or improved range of motion, decreased spasticity, osteoporosis prevention, balance restoration, pressure relief, improved social skills and cognition, possibly because respiratory functions and strength can improved.
She also says clients have noticed improvements in bowel and bladder functions, which to date have not been studied as thoroughly as bone-density and other improvements.
For quadriplegics, breathing and coughing enough to clear pulmonary congestion are difficult or impossible, which is why stabilizing pulmonary function is one of the main priorities in acute quadriplegia care. Their compromised pulmonary function makes cervical-cord trauma patients easy marks for pneumonia – a post-injury threat they and their caregivers have to continuously guard against. Respiratory conditions are the leading causes of illness and death during both the acute and chronic phases after SCI.
Home and vehicle accessibility are important components in the rehab realm, and offering solutions such as patient lifts, entryway ramps, door openers and vehicle lifts can greatly benefit both the supplier and end-user.
Clients with quadriplegia can achieve a higher level of independence with vehicle and patient lifts, and achieve an increased level of function to meet clinical and personal goals.
With bathrooms being the most dangerous rooms in the house even for people without a limitation in mobility, providers need to pay special attention to the needs of clients with quadriplegia in order to make their bathrooms safe. One of the most significant problems that bath safety products can solve is transferring safely to the shower or tub. Many transfer boards and benches can make a client’s bathroom a dramatically safer place. Cushioned bath safety products can be instrumental in preventing pressure ulcers. Additional safety items like grab bars, shower chairs, safety rails and special commodes can help ensure safety as well.
A Glimpse Into the Future
What changes in rehab are likely to happen down the road?
Tanguay says, “It’s the number of clients who go abroad for treatments that are not clinically approved in the United States. Two major destinations are China, where stem-cell research is going on, and Portugal, even South America. I had several patients who entered these programs for surgery, then came back for intensive rehab treatment. We’re seeing this mostly in people who are two, five, even up to 20 years post-injury. Some are seeing significant gains in muscle control, increased function in their upper extremities, better sensation and bowel and bladder control, things they were unable to do prior to surgical intervention.”
According to Hammond, acute-care medical treatment is better, so a lot more people are surviving SCIs. “Also, technology is affording patients a lot more options for integrated controls for power wheelchair mobility,” Hammond says.
The Miami Project, based at The University of Miami School of Medicine and focusing exclusively on SCI research, is what Barnum says is the most exciting thing occurring for SCI clients now. “If we can find a way that most people with SCIs don’t need my chair, I won’t be financially happy, but I’ll be very happy. That and the work going on to potentially regenerate nerves — these developments could obsolete what I do. I will be thrilled for the clients. Soon, we may not face this difficulty in anywhere near the same numbers as we do now.”